These are my reflections on my interview project. I am recording the stories of people living with disabilities. Personal, real stories - be they humorous, sad, angry, fun, or ... whatever! Comments are welcome.

Tuesday, March 13, 2007

Reflecting on the fact that the outrageous conditions faced by our veterans at Walter Reed Hospital’s outpatient facilities is similar to the conditions faced by many non-veterans every day, Carol Marfisi, from Disability Studies, says,

"What disturbs me is that the same deplorable conditions and substandard care and services are every day occurrences in the lives of many people with disabilities, as well as the elderly, who are living in nursing homes and long-term care facilities. The United States government is quick to covet credit as the world's most developed and advanced country yet under its very eyes, we see physical, emotional, and sexual abuse in these facilities."

Kay Olson reflects on her 1 year anniversary of “escaping institutionalization”. It is a powerful post. Please, please go read it. Without the diligent advocacy of her parents and rehabilitation staff, she would have fallen victim to the cavalier attitude of an insurance agent who wanted to place her in a nursing home unfit for habitation. Kay believes that had she gone to that nursing home, she would have died from respiratory problems or from some other cause.

Thank you, Kay, for sharing such a personal and painful story. I have learned a lot from you over the past 6 months about advocacy, dignity, inclusion and attitude.

I found Kay’s post upsetting for many reasons. Here are a few.

-The nursing home conditions she describes are appalling. They remind me of the conditions I read about in New Orleans’ nursing homes, the conditions that didn’t come to light until after we saw people abandoned with Hurricane Katrina.

-I am amazed at how “easy” it is for a person to be dumped, abandoned and discarded.

-I can see this experience being a possibility in my future.

-I have parental support. Kay has parental support. What about people who don’t have a support system in place?

-Kay’s story may be the exact situation that Ashley X’s parents were afraid of, a fear that led them to mutilate their daughter under the false assumption that she would then be “safe” from the horrors of institutionalization.

-Maybe this is how some people jump to the conclusion that euthanasia is a choice. The nursing home option seems to be saying, “Your life is worthless. It’s best for you to die, and we’ll give you a push.”

We need change! As a society our values and priorities, and the resulting allocation of resources are very wrong. Tragically, immorally wrong.

4 comments:

Thanks for the link and thoughtful comments, David. And the thing is, you and I have parents and others to help us now, but not forever, right? Ashley X too. Having people to back you up: It's a defense, not a solution.

About Me

I took a year away from college to interview people with disabilities, share their stories, and post my reflections. I'm amazed by how much I learned over this past year. Now, I'm back in school, not having time to interview, but continuing to share my thoughts.
About me - I like sports, music, travel, and conversation. And, I have cerebral palsy.
I believe society often underestimates the complexity of living with a disability - the joys, the challenges, the ordinary, and the extraordinary.